I admire your optimistic attitude. Thank you for sharing. I guess that is sort of the way I have handled my survivorship. One day at a time and now that I am a little over 6 years since treatment ended I can even think 3 or 5 days at time.

I know that is not always the way things work out. Even when some feel that they have done the best they could, still it has not been enough. My SIL Faye had a recurrence in the bone about a year after diagnoses. She blames herself for never having a mammogram and never participating in any kind of medical testing that could have alerted her to a problem.

There are those who have recurrences and fight and live for years.

Curable??? I don't know at this time; I guess my future hold that answer. All I know is, I, like you Beck, have to say, "I feel I'm cured". Until something happens to me otherwise, I'm living life to the fullest.

Reading CourtneysDad's posts regarding the loss of his daughter were heartbreaking and I only wish that he had access to the love and support so freely given on this site while he was going through such a tragic ordeal. Susan and I have a 22 year old daughter and I cannot imagine the anguish he experienced. I pray that he will find peace, even though I know his heart will never mend.

Thank you, Steve, for your gentle and thoughtful responses.

When Susan was diagnosed, I remember telling a friend that I was scared because there was a chance that she could die. He looked at me and said, "Yes, there is a chance that she could die..... and that chance is 100%..........but not necessarily from TNBC." This simple statement was exactly what I needed to hear at that moment. For better or worse, none of us know what the future holds. As Susan and I were driving back and forth to Vanderbilt over a mountain range and through snow and ice storms to get her treatment, the thought often crossed my mind that Susan could be cured only for us to perish in a car accident on our way home.

Since then, I have learned of many TNBC success stories (people that would certainly meet my definition of "cured") through this site and elsewhere. I'm certain that many of us on this site have been cured and will be cured, but we unfortunately have to wait on the passage of some arbitrary date on the calendar to believe it. Three years? Five years? Eight years? I try, with limited success, not to worry too much about recurrence because it destroys my ability to enjoy the present moment. And I do realize that it is pointless to be hopeless. As Steve always says, we should simply try to find the beauty in each day.

That is very well said. You are 100% right in all that you said, especially it is pointless to be hopeless. Some days are much harder than others to embrace this, but each day that I am alive and well I thank god I am still here and healthy. It really reminds me of the song "Day by Day" from the musical "Godspell."

I just found out today that I am triple negative. I am planning to have surgery on March 1. Meeting with a med onc tomorrow. I am very scared. I am 39 years old and healthy otherwise. At this point it looks like Stage 2 with clinically negative nodes. We won't know for sure until after surgery.

Welcome to our forum. I am sorry that, at your young age, that you are dealing with this.

I am sending you my contact info if you would like to speak privately.

There are a number of things I would suggest you consider if you haven't done so already.

I am not a medical professional so please check with a TNBC savvy oncologist. No matter who your oncologist is now I would suggest you seek a second opinion, both on your pathology report and your treatment plan.

1. has anyone suggested you see a Certified Genetic Counselor and get tested for the BRCA mutation.

2. is your oncologist at a NCCN or NCI facility.

3. has anyone mentioned neo-adjuvant treatment to you

Again, I am not a medical professional. I am an volunteer patient advocate. But maybe a conversation might be useful..

You can call me in about 30 minutes if you wish...or I am happy to call you.

good luck to you..

warmly,

Steve

I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates

What is the difference between neo-adjuvant and adjuvant
treatment? I was diagnosed 01/22/13 and still waiting for surgery. I saw both
my surgeon and oncologist and they are recommending surgery 1st. I am so
anxious to get at least the surgery over with, but my surgeon is insisting on
having the BRAC test result before surgery. From all I hear tnbc is aggressive
and needs immediate treatment. I want the lump out like yesterday. I am also
trying to eat better. Do you know if there are any foods and vitamins that can
slow cancer cell growth? Right now I am taking Vit. D and COQ-10, I stopped
Omega-3 because I was worried about its effect. Thanks

There are various thoughts on both and from my experience there are different philosophies about this even in various parts of the U.S. Normally with TNBC, which is often aggressive, as you mentioned, chemotherapy is recommended either pre-surgery or after. Some oncologists seem to feel that if your mass is > 2CM that neo-adjuvant chemo is desirable because it is an opportunity to see if the chemotherapy is working. If you have surgery first and let's say you have lumpectomy there is often no visual tumor left in your body so it is hard to know whether whatever chemo is suggested is killing your cancer because there is no measurable tumor.

There are also many factors that play into the decision such as KI-67 score and some test for CTC (Circulating Tumor Cells), lymph node involvement and other information from your pathology report.

With certain aggressive cancers it is felt that you may have tumor cells in your body and therefore, some feel, that by trying a chemo pre-surgery that chemo will not only kill the visible cancer so that you have a pCR (pathologic complete response) but any cancer cells that may be in your system. If you have surgery first and you have cells in your body you normally have to wait six weeks, till your body heals from the surgery, to start the chemo. During that time the cancer cells might be growing. On the other hand if you have chemo first you normally have to wait six weeks to start the chemo and some docs feels that some tumors should be removed right away.

Are your oncologist and surgeon experts in TNBC? Are you being seen at a NCCN or NCI facility? No matter where you are being seen I would suggest getting a second opinion both as to your treatment plan and your pathology slides. I have seen several case where the patient was told she had TNBC only to find out, utilizing FISH technology, that she was HER2/neu+ and she should be/have been on Herceptin. But you need to try to make sure your second opinion is coming from someone who is knowledgeable.

It should not take more than two weeks to get your BRCA results and I think the information is important. That should all be explained to you by a Certified Genetic Counselor (CGC). I would check with your oncologist regarding supplements. I think most oncologists are in positive agreement about Vit D. I think eating "better" is always a good thing.

Sorry you are dealing with this. Good luck to you. Hope the above was helpful. If you would like to talk please send me a PM. I am a volunteer patient advocate so no fees and I do not accept monies from doctors, drug companies, cancer centers etc. But, please note that I am not a medical professional and cannot give you medical advice.

warmly,

Steve

I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates

I am never sure when to jump in. I certainly don't want to diminish anyone's tx or experience. It does differ for all of us. I discovered my lump in January of 2001, 2 weeks prior to my mother passing away from ovarian cancer. I had watched her do battle for 3 1/2 years with as many chemo's. She was 64 and I was 44 at the time.

In 2001, the term TN wasn't used. I only knew what I didn't have....no ER or PR + and no her2. The option of mastectomy wasn't discussed. I had a lumpectomy and the tx du jour. I had a 2 cm mass. Some consider that stage 2. I always stated it as stage 1 [ maybe my need of denial ! Make light] In 2001 standard was 4 rounds of AC. This was before SNB, so 13 nodes, all negative were removed. I was a single parent with 2 daughters to raise, age 9 & 13. Fortunately or maybe because of them, chemo didn't seem too bad. I worked all thru tx.

I had genetic testing and met with a cgc two years later. I tested negative. I recently participated in the King study and again was negative for everything.

I believe the term TN came about in 2006, the same year as this foundation. I found it in 2007 after reading a magazine article. Until then, I hadn't realized they named what I had had. The education and support on this site is invaluable. I realize on a daily basis how fortunate I am, that almost any of these stories could have been mine. I decided early on I couldn't live with fear. Easier said than done. With the passage of time, the fear does diminish. We can only control so much.

I post to give people hope and let them know there are some positive stories to reflect on. I want to thank all for the information and time they give.

hmmm, i have not posted on this site for a long time but felt i needed to speak up.

i am a 9+ survivor today and i survived in spite of my doctors. i found my mass on a thursday. i went to my internal meds doc on friday and he signed me up for mammogram (i had had a mammogram within the last year, no sign) on tuesday, i also received an ultrasound unexpected on the same day..slow day at hospital (whose nickname is the morgue). lovely radiologist gave me the news that i had breast cancer right after my ultrasound..guess he wanted to play god. i was there all alone. my first verbal response was that i was going to die. he informed me i should have done more breast exams..lovely man...not..

next day got my biopsy done..another slow day at hospital and within 4 days of my biopsy a general surgeon removed my breast (it was becoming a belly warmer anyway). it was then discovered that an oncologist had moved back into town and i did the devils koolaid and the taxol.. no side affects (it was all the chocolate cake i ate) except hair lost which i really had fun with..chemo days i wore my skull and crossbows do rag. i had pink wigs, blue wigs, and made many head scarfs from fabric i liked. my mass was 5cm which made me a IIb, no nodes.. when i later went back to my internal doc he said i had an easy cancer to treat..ah, the uneducated doctor.

after my last trip to my onc (third year out) i asked if a could get a referral to have the brac testing done. he told me no, there was no history of bc in my family, i have 5 children, 3 daughters and i nag them monthly to check, my oldest daughter has had a baseline mammogram but she has dense breasts. You know, i dont worry about a recurrence for me because what has happened in my body has already happened. but i pray that my children are spared. i when i read courtneys dad's post and some of his claims, unfortunately it is true than people are pulled from trial so as not to mess up the data. i have read many a book about this and it is sad.

i do not make light of cancer.. it is ugly and can be a killer but everyday some researcher find something new and i continue to educated myself in case the knowledge is ever needed.

Thank you for the information.
I am trying to set up an appointment with Dr Carey at UNC. When I was diagnosed
about 3weeks ago, my first instinct was to get the tumor out as soon as
possible, but I had to wait more than a week to see a surgeon and oncologist. The initial ultrasound measured 2cm but recent
MRI showed 2.9cm which is very scary. The doctors seem not to be in a hurry to
start treatment. If I had known that the BRAC testing would delay surgery, I
would have postponed it. The oncologist did not suggest Chemo first. It is only
from speaking with survivors that I knew, that was an option. Frankly I am very
frustrated right now and I wish I had sought second opinion right away. I hope
I can get an appointment with Dr Carey soon. Thanks again for your advice.

ud45Hang in there.You are in the same position I was in Dec. 2011, a mere 13+ months ago when I got the fateful phone call. My breast tumor was 1.7 cm at its longest diameter by US and after tumor board meeting, the breast surgeon recommended lumpectomy and wanted to schedule a date. My head was swimming since I was just told I was triple-negative, and not quite ready to sign on to surgery. I am glad I did not because I went to get a second opinion. That second opinion surgeon requested a MRI and that revealed the mass to be 3 cm, not 1.7 cm as determined by US. My second opinion surgeon actually recommended neoadjuvant chemo, in her words, I had a good-sized tumor. I took her advice. All in all, it was almost 2 months before I got started on treatment (see my signature) but I am glad I took the time to make an informed decision.I know that it is very worrisome and stressful during this period and you just want to start doing something. But in the words of my second opinion breast surgeon (who happens to be an internationally recognized breast surgeon and researcher), it's not an emergency just because you just found it.All the best, Lee

I wish I knew! Maybe if your mind tells your body that you are healed. What I'd like to know is how to live with the side effects? I got TNBC in 2010. Had the biopsies, surgeries, Months of Disabling ACT Chemo, then my lumpectomy and ending with 35 days of radiation. Including 5 days of the boost. Ending on 11/17/10. My breast is still tanned and swollen. Neuropathy, dropping things, feeling like I'm walking on hot coals and fire while someone pounds me toes with a hammer. Etc.. I can't find any relief from the pain. My husband lost his job in '09. So to date no one is employed and we have Zero income! So how can I find healing and wellness? Am I cured? Is anyone cured? I tell myself I am. Even though the treatments left me feeling like I was torutered and left to die. I can't have the genetics test. To help my own married Daughters or my grand children.I know very little of my own health history. Other then seeing my own Mother twice in my life. The last time when I was 19 & pregnant. We got to her hospital room in time to find her Dying from Breast Cancer. She never told me she loved me. Or if I had a dad or family. All my life I wanted parents. I couldn't tell her she'd be a grandmother. She didn't live. I never saw her again after that short, emotional bittersweet visit. She was only 46. I wasn't much older then she was when I got TNBC. My husband got to see her Dying look on my face! He begged me to live! I'm a woman of my word. I'm here. I never had the tests and scans others have had. How do I know its gone? How does anyone? I care about everyone! I wish everyone their own Healing and happily ever after. In wellness. Sending my care to all that have battled and beat this! You're my Hero.

I am so sorry that you have so many unanswered questions in your life.

1. Did my mother love me?

2. Who was my dad and do I have extended family?

3. Will I pass this disease to my daughter?

4. Will husband find employment?

5. AM I HEALED FROM THIS AWFUL CANCER?

Sweetie, you are not alone in asking many of these questions. There are others of us who identify with you. I do know that I am alive and well 6 years after being diagnosed with TN cancer. When I say 'well', I mean I have been able to go on with areas of my life, but others I have not been able to resume. I cannot do strenuous yard work that I once enjoyed. I still have some neuropothy in my fingers and bottoms of feet. My arthritis is worse, but maybe that is age??? Words slip through cracks in my memory at times, but I have learned to say "chemo brain" and go on with the conversation.

What I want to say is, I Thank God everyday for what I can still do and try not to dwell on things I cannot do. I have filled my time with activities that I enjoy, (volunteering) and it doesn't cost me anything except my time.

I pray that you will begin to feel some relief from the pressure and unanswered questions in your life.

Please keep posting and sharing. You have joined a group of ladies who UNDERSTAND. Also, we would like to hear more of your story, such as; the stage and grade of your cancer. Having no lymph node involved and being able to have a lumpectomy after treatments sounds very encouraging.

aNGLE LINDA i feel for you i never had the scan this time , i did with my cancer in 2007, i worry alot to , but the other day after my mamo came out fine , i got mad , damn it im sick of spending my time worring , it isnt going to change a thing, we are ok with money husband had good retirement, but i see so many give advice about second oppunes some times i think dont they understand, there are alot of ones on here that cant afford , to drive long distances to see another doc. i would have to go 80 miles to chicago sometimes i feel so dumb when im on here , no one offered me chemo first, i dont know about all the meds , am i alone , im just a mother , grandmother, and wife , when i write on here i tend to try and talk more about the human aspects of it , i dont know all the med , stuff, guess i should maybe i should of listened to my doc, whom i see today, he said im not to worry about it , thats his job, its hard to do, but maybe that would help me beat it more then anything i dont have many side effects from chemo , lucky i guess for once, the other day i dropped a mirro , excuse my spelling that is my biggest side effect, i cant picture the words to spell them anymore, any i dropped the mirror, and i said oh no 7 yrs. bad luck , my husband said, i asked him how the heck will i know, thats my life haha, i lost my mom a year ago that was rough , the was told i had tn 2 months later, my daughter turns 40 today, pray all the time she will never go through this, hang in Beck

ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.

I also heard about the 5 year survivor thing I don't know if it is true I hope it is. I just made my 3 years and hope it is true. I did learn that having a positive attitude helps. I just lost my cousin to breast cancer last year she was about 6 years out. She was not triple negative like I was but it did put a fear in me again I wonder how they know if it is gone if they don't check that side after a mastectomy. They do check the other breast every year but that is as far as it goes. I did get a couple of bone scans that came back negative in 2011 & 2012. I do get the doctor's exam every year also but I always wonder. I did well on the TAXOTORE & CYTOXIN.

Hi Lynda, Your post gives me hope. I will have a lumpectomy for a 1 cm grade 3 invasive and insitu ductal carcinoma in two weeks. I was told that if the tumor is less than 1/2 cm when they measure it, I won't have to do chemo. I would just have surgery and radiation. Can you tell me what your doctor said to justify no chemo with TNBC? I'm still worried about skipping chemo. I do not have breast cancer in my family, I was 68 when I found it, and the tumor is small. That is why I ws told I didn't have to do chemo unless it's bigger than that. Thanks.

I hope that you are doing well and pray that you do not have to deal with another cancer diagnosis. I was almost 5 years out from my initial TNBC diagnosis and felt a lump in the opposite breast. My oncologist made me wait 3 months to see if the lump changed. When I returned at the end of May, it had grown. Exactly 5 years after my first diagnosis I underwent a 2nd mastectomy. I, too, was hoping that I could meet that 5 year mark. In the end, although I am not thrilled about the new cancer, I am relieved that I found the lump earlier and can begin treating it. That said, I think there is a lot of hope that you won't have to go through this again.

Dear Sharon- My TNBC (before surgery) measures 6x9x7 ml. If it hasn't spread to the nodes (still waiting for the pathology report) then it would be considered stage I. Regardless, my oncologist said that I am going through chemo again because it is my second TNBC tumor.

In two months, hopefully, my daughter will enter her 9th year of having No Evidence of Disease (NED) from TNBC. She has had extensive surgery and chemo (ACT).

I don't think you can ever say, with TNBC, that you are "cured" for sure. Unfortunately, there is no 'for sure' with this disease but, on a practical basis, we hope she is cured. However she is still doing yearly surveillance which is stressful to her and to me.

it has been shown in various studies that passing your five year mark without a recurrence is very important and in fact, long-term survival is better with TNBC, when you are 5 years NED, than other breast cancers.

I encourage all here to try to find the beauty in each day and concentrate on the positive things in your life and try not to focus on the chances of recurrence. I know that is easy for me to type and may be hard for you to do, but please try.

For my daughter, despite all these years of NED the spectre of cancer never completely leaves her but she is trying her best to live her life in a healthy way. She exercises a lot, finds yoga very helpful and is able to work at her job, productively, as a guidance counselor at a large public middle school.

with my love to all here,

Steve

I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates

Having said that, just this morning I had labs drawn, chest x-ray done, and gave urine sample all in preparation for my yearly physical on July 3rd. After the physical I will be scheduled for a mammogram and on August 22nd I have a yearly appointment scheduled with my oncologist.

It's that time of year again and the stomach butterflies flutter ever so softly. As I reach the mammogram date the butterflies will flutter more.

Like Steve's daughter, my anxiety never completely goes away. I do live my life seeking the beauty in each day and staying active, but the TNBC memories are still there. I would like to consider myself "cured", but that is not something I can do "YET".....

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